Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic information

Abstract

Clinical Medicine 2012, Vol 12, No 1: 5-6 Although some health professionals may view a genetic test as simply another laboratory request form to be completed, there are complexities to consider. Firstly, the language and concepts surrounding genetic information and associated notions of identity or stigma can be more complex than those sur- rounding, say, a haemoglobin check, and this needs to be incor- porated in the consent process of certain tests. Secondly, the results of a genetic test in one person may reveal information about the likelihood of disease in family members, so that con- sent for relevant communication, and the limits of confiden- tiality, may need to be considered. As a consequence, the Joint Committee on Medical Genetics, a tripartite committee of the Royal Colleges of Physicians, Pathologists and British Society of Human Genetics, has recently updated its guidance on consent and confidentiality in clinical genetic practice. 3 The guidance explores the ethical and legal challenges inherent in managing such sensitive, personal, yet at the same time often familial, information. By using a series of worked illustrative examples based upon cases that arose in clinical practice (some examples are given in Boxes 1-3), the report aims to guide healthcare professionals through the complex web of legislation and professional guidance relating to the use of genetic data and samples. It recognises the growing uncertainty among healthcare professionals about the duties and responsibilities they may have towards relatives of a patient, including when it might be appropriate or legiti- mate to utilise genetic information from one person for the benefit of another in order to recommend appropriate inter- ventions. At the same time it attempts to formalise procedures to recognise that many service users attend genetic clinics not just for themselves, but often (at least in part) in order to help